Life on Prednisone | My Morning Routine Living with Lupus
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- Опубликовано: 8 фев 2025
- Well this was different. I wanted to share my morning with you today. I hope you enjoyed this style of video, it was pretty fun to have a friend tagging along for the day.
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My name is Samantha Wayne and I have been creating advocacy videos on RUclips since 2009. I created Live Hope Lupus in order to create a space where those with chronic illnesses could get information and support. Please subscribe to follow me along on this journey!
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Sam this is the best! And we totally get the brain frog!
Just came off 60mg and at 40 now. This is month 9 of it trying to get me out of a severe sarcodoiosis flare. And the sick routine wears me out too. It’s there but I want to be normal and happy. Love and hugs to you. New subscriber here.
It’s a tough spot to be in. I hope you are able to get out of the flare soon. Thank you for subscribing!
I’ve been on prednisone for almost 7 years! It’s been a constant battle to try to lean off of it. Currently I am alternating 5 mg and 2.5 mg every other day. I can defiantly feel it.
In the same boat! Trying to get onto the 2.5 from the 5 gets my lupus active again.
Same, I try to take 2.5mg for a second day in a row and I doze off on the couch after being awake only 3-4 hours. And then I cry a lot.
I have Meniere's Disease and your videos get me through some of my dark days. You are seriously an inspiration! Never give up!
“Trying to get back to health... which is why I put the Oreos in my overnight oats!” 😂🖤💜 love it, and I totally do the same stuff and go 🤷🏼♀️🤷🏼♀️ prednisone made me do it. I liked this video a whole lot - it’s cheered me up a ton and made me giggle! Hope to see more of these for sure!
I am on day three of my second course of the year and just decided to search videos! So grateful I found your channel! I am so sorry that anyone has to go through what I do, but there is definitely something to seeing someone similar to yourself going through it and killing it instead of the other way around! I have always thought “we might not have come with a Manuel, but that doesn’t mean someone can’t make one.”! So I am glad you did!!! I hope you are feeling well in the present. Please know this DOES help people! Thank you.
I was diagnosed with systemic lupus in 2016 at 19 after my gallbladder and brain were attacked. I have to do 6 months of chemo, but even that was a blessing because the doctors didn't expect me to even live after I had three back-to-back seizures. Since then I've been on off prednisone ( at the highest 85 mg.,where I would sleep maybe four hours every week and my face was so huge I couldn't wear my glasses) and in and out of the hospital (this summer I was literally hospitalized all three months of Summer and when the doctor said I have to go back on just 40mg prednisone, I have never cried harder in my life. I'm just now tapering down to 5 mg and I'm still going through insomnia, and literally just going back to work now after finally deciding to take a break from school, and that was mainly due to all of the side effects from prednisone really affecting my sleeping schedule and overall self-esteem). Thank you so much for posting these videos, seeing other people going through something as complex as lupus really does make it feel less unbearable and gives me hope. Truly hoping nothing but the best for you, I don't know you or anything but you're very strong for putting such a vulnerable experience on such a public platform!!
You've had a tough few years. It ain't easy having all that happen and being so young either. You have the fight in you though. Keep it up. I'm glad my videos have helped. You all help me so much too!
Prednisone is the devil. However, it kept the lupus pain at bay for a while .😩
I really like your confidence, that is great, be strong...Good bless you.
Sweet and kind Sam💗. I completely understand how your feeling and it sucks. Am still on 10 mg of prednisone for maintenance and girl I used to eat everything sweet even in my sleep (my weakness ice cream😉😋really) I also have platelet issues, blood clots, anemia. So i have sorta good days and like you just said i do the best i can. Theres alot i have been thru with lupus, but 22 years of living with lupus, am so happy to be alive. Am so proud of you, always with a beautiful smile and positive energy
I love you and your always in prayers💜🦋🖐💟🤗😘
Very happy you are feeling better and I like the vlog format! Thank you for all the information you provide, its helped me deal with this in-between stage of not being officially diagnosed with Lupus yet but my Rheumy thinks its highly likely.
I was put on high dose prednisone 80mg this past summer and i didn't feel normal till i was down to 40 as well but i am still on it because i have to taper slowly now and i am down to 8mg. I gained about 60 lbs since June which is a lot, super moon face, depression, broken teeth and the worst it ruined my bones in my back and degenerated my disks that i ended up needing a laminectomy two weeks ago. Mind you, I never had back problems before Prednisone. My suggestion is take it till u don't need it and get off as soon as u can handle it because long term prednisone use will cause more harm than good. I regret it so much and I am still undiagnosed auto immune/possible lupus doctor said i tested positive then negative so he cannot officially diagnose me. They put me on it because my sed rate was 108 in June. Good luck and thank you for sharing this I have been following your journey for a while and you are a fighter. Hope u start to feel better soon.
So loving the vlogs. I totally get everything you're going through. A short or long shower will drain me so badly and quickly. I only take 5 mg daily of prednisone but I have the same side effects as you describe. And brain fog, insomnia, moon face...😫😔.
I follow you on Facebook but the vlogs are great. Take care of yourself and stay strong!! 💪🏽👍🏼🙏🏽🤗💜
My friends probably think I’m nuts because I’ll forget what I’m talking about mid sentence and just say “brain fog”, then continue like nothing happened lmao
So glad your labs are getting better. Such a love/ hate relationship with Presnisone. Love the energy I get from it, but the side effects are awful. I have to do a Prednisone burst to get through the holidays...and I freaking got stuff done, but ate all the things and got no sleep. Fuck Lupus.
Would you talk about working? I know you went to college, but I wasn’t sure if you’re done or still going? If it’s too personal I understand. I am 34 and haven’t worked in 8 years because of Lupus, and miss it so much. Last month I had my disability hearing and I’m feeling pretty good about it. It’s just so bitter sweet. I hate to be considered disabled at such a young age, but it will also help me because, money. I dunno, I was just wondering if you have to deal with this too.
That was my mantra throughout the holiday, "I ate all the things!" I'm glad you made it through but hope you're able to get off of it nicely.
I know I got diagnosed with ankeylosely spondinitis sever arthritis when I was 28 how in the hall did I get it at an early age know I'm having hand and wrist issue I'm gonna see a Chinese Dr for hand I'm taking maloxocan it sort to work but I wake up not being able to move my hand stiff until I take it it helps but then I get the toilet time if you know what I mean so dam if I do dam if I don't only person famous I know is Mick mars of Morley crue I told live watch the prednisone I had 10mg after 4wks I noticed weight gain it makes you eat I hope your hearing goes well I wish all of us could get a support group cause when your hurting people that don't have it including the doctor they have know idea what it feels like your passed 95%of the time your like I remember I could do this and that it's like were imprisoned in our body well take care
The last time I had to take Prednisone, I was up painting the office at 0300! LOL. Then I got a painful wart like sore on the ball of my foot. I do not like Prednisone. I've only been on it three times since my SLE diagnosis in 2013. I'm trying. Loosing patience with this disease.
Thank you so much for your honesty in dealing with these auto immune diseases. My daughter, 33, was just diagnosed with sjogrens so I’m doing a lot of research on helpful pain relief that may work for her, but she isn’t very receptive at all. I’m wondering if I need to back off so she can work through this new diagnosis herself? I’d rather I go through the internet since there are horror stories out there that she doesn’t need to worry extra over. She has chest pain, some back pain and random leg pains, resting heart rate goes up for no reason (help me anyone with answers about that!), dry eyes, dry mouth. I’m going to get her the back pad hoping she’ll make use of that. She’s been to the cardiologist, pulmonologist, ct scans, xrays, blood tests. So she’s done everything needed so far, but I’m just afraid of her not taking a proactive enough approach and that will cause even more symptoms and damage to organs. Is that the case? How quickly does she need to address all of her issues with this disease? Is there time for her to just process all of this?
Terri Hi Terri! It is wonderful that you are so supportive for your daughter during this time. I know now that getting a diagnosis is just as hard on those who are on the other end of things. Seems she has done all the correct testing to make sure nothing more serious is going on. Sjogrens can be a pain but if she is keeping up with doctors appointment, organ involvement isn’t as likely. The doctors will most likely start her on plaquinel and this will help ease her joints and fatigue. I would also recommend Xylimelts for dry mouth at night. I have the link to those in my amazon storefront. These helped me to not feel as dry upon waking up. Lungs and mouth. Overall it does take time to process. She may need a little space to come to terms with her new life. Communication is key as well.
Live Hope Lupus thanks for your quick response to my questions. I look forward to watching more of your videos. I hope you’re feeling better now that you’re out of the hospital.
I was just diagnosed with secondary sjorgens but my primary disease hasn't showed up yet in my blood work which is odd but I know its SSA-RO SPECKLED PATTERN
Hang in there. I'm a lupus warrior of 22 years. Recently awarded disability. Prednisone is the devil.... but necessary. I take 5 mg daily. Keep up with the vlogs. Show videos of what you cook/eat, how you clean, exercises, yoga, crafts, read.... anything.
I’ve been on now for 2 years for severe allergies and asthma..I’ve gained 100lbs and I now use a walker because it’s made me so weak…it’s so difficult. Hugs and love to you
I have severe lupus and I’m still on prednisone. I know how you feel just keep it positive.
Starting my 50mg course and get a bone marrow test in 7 days. I'm at my lowest trying to see a light. I don't deserve this much pain.
Your hair looks great very healthy anything specifically you use?
I am right there with you, lately it's been so cold here in Vegas and I just moved into a new apartment and our AC/heater is broken and so inside its been the temp its been outside. Also I hate waiting for my hair to dry, mine sometimes can take over 24 hours to fully dry. Plus I try to avoid using heat on it so no blow drying.
I like vlogging style type of video even if you're not doing much throughout the day.
Can you make a video about your medical cost? What medical insurance has worked for you or what resources have you used?
God bless you Girl. I could not imagine going through this at your age or if ether one of my daughters had to go through this.
Thank you for the support!
I was on it for two years constantly know I am on and off with it I take plaquiel and methatraxate and folic acid and omeprazole, I am having sever problems with stopping infections but I’m working on it
Does prednison have less side effect than methyl prednisolon? Thank you
I like the vlogging videos!
Thank you for doing these videos. Helps us all.
Hi
Prenisolidine how long you taking & any side effects observed, what is the dose..it effects to the body...
I now take 5 mg pred for rheaumatoid arthritis I eventuality lowered the dose myself it has. Caused a lot of problems
If you add some light background music I feel like the video would flow better! Also, if your moonface does go away can you talk more about it and how to deal with it? Cause I was on heavy prednisone a few months ago, and one cheek is still a bit more swollen and makes my face uneven /:
I have been on P for over three years now and can't go off it. It is the only med that really helps me. My research doc wants me to go off it so he put me on cellcept 1000 mgs twice a day about a month ago and if that does not help in another month he wants to give me rituximab infusions and he says that WILL stop the inflammation. My inflamatory markers ESR and CRP and rheumatoid factor are always sky high. I am dxs with lupus based on positve ANA, dsDNA, phospholipid abs, low white cells, low complements, Lupus Myelitis and extreme inflamatory arthritis with severe effusions with extreme pain where every joint has been affected at one time or another. I even have had several joints drained and many cortisone injections. And I even had a small brain bleed. Its like years off pure torture. Lupus Sucks.
Doc just raised me up to 2000mg and Rituximab is my next step. Let's hope one of those works out for us. The sooner the better eh?
How long would it usually take to see if the cellcept will help? I really don't feel any difference yet. I still have to take 10-20 mgs and occasionally more of prednisone daily. And I am skeptical about the rituximab and what any doctor says because I have been through so much. @@HealWithSamantha
appollos a it can take 6 - 12 weeks before you start seeing any changes on Cellcept.
Recently did a video on Cellcept if you haven’t seen: ruclips.net/video/lsF75zYHIHo/видео.html
About to start P😟. Is there no sleep at all?!:/worries me more than a moon face. Is fatty belly and neck real while on P?
Feel better get lots of rest 💜🙏🦋. I’m on prednisone also.
I think the prednisone has made my blood pressure high? The last few dental appointments I have had they took my BP and said it was high. In fact, once the dental tech said I was “a walking stroke.” That has worried me since. 😒
Damm i feel so bad for u i been there where u are right now and it suckss i hate prednisone i retain so much liquid the moon face was the worst feeling i hope u feel better soon god bless
Hello rebecca and fellow autoimmune sufferers.....I have read that having injections of Triamcinolone (a cortisteroid) can be less debilitating side effects wise to oral steroids.....Has anyone tried "Triamcinolone" ? What are the pros and cons of the injection vs the oral steroid use ? I'm new to all of this so any opinions,experiences,or knowledge would be greatly appreciated....
I like the moving around and day in the life type vlogs. The sit and chat are ok but not my favs. Glad you’re feeling better even if it means taking the drugs. Sadly we don’t always have an option when it comes to living with Lupus.
I'll have to incorporate these more often!
Great video. I was on pred for 2 years not fun I gained over 100 pounds. Still trying to get the weight off been on and off it since 04. But now for emergencie Flair's as I call them. Your inspiring ty
My autoimmune symptoms are lessened when I avoid grains lectins dairy and sugar. Not saying it will help u but sadly it helps me but there is very little I can eat 😭
monkeybearmax I definitely noticed a difference when I eliminated dairy! Sugar is the next step. Something I’m easing back into.... but right now chocolate is important lol. Just know I’d completely fail if I went cold turkey right now on pred.
Live Hope Lupus I’m mostly sugar free and it does help me the best subs I have found are monk fruit then stevia. Feel better! Hang in there!
I have Hemolytic Anemia, AS and TMJ. I just had my 3rd hospitalization for HA and am back on prednisone after 4 days in the hospital and two blood transfusions. Supposed to be taking 60 mg but I'm only taking 30 mg because of the side effects (my Dr. wouldn't listen to my concerns so I'm just flat out lying to him). Already so achy. It destroyed my bones (broke my wrist last year doing nothing) and have had osteopenia turn to osteoporosis. It's made me gain so much weight. It's the devil's drug. I'm starting 4 weeks of Rituxan injections next week. Hoping to taper off soon. Oops - just realized I didn't take my prednisone yet tonight.
Loved this ^_^ hugs! Id like to colour today... i have been housebound since christmas so im hoping some colouring will help get my mind feeling less foggy? Oh desnt prednisone taste yummy lol i am on 5mg daily been on it for years. Hope your day kept getting better and better!
Chloe Mahr that lovely metal taste! Hope you’re doing well today!
Do some of you have the "malar rash" over your eye lids as well?
Question what dosage are you on ? They are about to put me on 60 mg I’m freaking out so I need some input?
Hmm my doctor told me I might start on this tomorrow. So I looked up life right away on RUclips haha. I’m 32weeks pregnant and my baby girl is giving me kidney damage 🥲 I don’t smoke or drink. And there’s no history in my family of kidney disease or lupus. But my ANA test came out positive. Seeing the rheumatologist tomorrow for more blood work and possibly starting this steroid due to high creatinine levels. I just hope everything goes back to normal after I give birth 🥺🥺😢
Prednisone is the only thing that helps me. Anti inflammatory meds help, but not like P. I did a burst over Thanksgiving I had a lot to do and traveling, I learned that I can take to much but 5-10 mgs is the sweet spot for me. All the side effects to me have been worth it. I think you should start a #becauseprednisone trend. Going to do a little more yoga today.
Hey hun that music that came on around 6 something playing in your video what’s the name of it :) please
I love your videos and personality.
Hey Sam, do you still take Methotrexate?? Unfortunately she up my dose today to 10 pills once a week, also my Rheumatologist was wanting to put me back on the Prednisone but I'm so afraid of it the side effects was so horrible
Samantha Dallas I am actually on Cellcept currently. My dose just got upped as well. Right there with you! Hope it goes well.
I was diagnosed with Lupus back in November of last year. Just found out I may have kidney involvement so prednisone and cellcept is in my future. I'm on plaquenil only right now. I would love to chat with you since you been dealing with this a long time.
I do get a lot of messages on social platforms but try my best to get back to them. Best place to contact me would be via Instagram: samanthamwayne or Facebook: Live Hope Lupus
You still look gorgeous!
pretty i'm sure anyway but it's the water retention from prednisone ..........
The problem with the medication when you drink it after two hours when you take a water you'll feel dizzy again you have to go back to sleep your body is itching again you don't have a life if you're drinking this my friend
How about trying the whals protocol for autoimmune diseases? Look up Dr. Terry Wahls on RUclips.
You say everybody is different. But I don't want to think about our differences. I only want to know what's the same. Truly we are blind to sameness. Oatmeal is right for nerves. Ok what of moonphases. Ever try zanaflex.
Brain fog lupus! I felt so normal when I forgot
Just got put on 20mg prednisone yesterday and I slept 3 hours last night. It’s going to be a long few weeks.
Also girl totally feel you on the showering at night
I was put on prednisone two weeks before getting married. Everything got done because of energy but gosh was I swollen lol
omg! I would probably freak out, but like I said we gotta do what we gotta do. Glad you had the energy at least!
Yes, I'm finally off of it. I hope you feel better soon!!!
You always look so beautiful.
Do more videos like this!
I completely relate to the brain fog🙈
I have lupus too! On P for 50mg for now. Hug you!
How did you do on 50 mg?
6' 46" Wow! Beautiful.
You look good
Insomnia is killing me
You’re hysterical...30mg of prednisone. Something new, I want to learn how to ice skate but my family is not so keen on the idea (Menieres Disease) Here’s something to watch on RUclips , search UGA mascot meets Texas Longhorn, BEVO. I need the recipe for the overnight oatmeal. Sorry 40mg of prednisone...🙄
Renee Runyan I’ll have to share a few recipes!
Lib watch how much you take cause it makes you eat a lot and puts weight on your joints so be careful
About to start P😟. Is there no sleep at all?!:/worries me more than a moon face. Is fatty belly and neck real while on P?
About to start P😟. Is there no sleep at all?!:/worries me more than a moon face. Is fatty belly and neck real while on P?